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Original poster

DLA form - help please

13 replies

Ben10isthespawnofthedevil · 05/04/2011 10:48

I have a copy of the new children's DLA form which is dated February 2011. Cerebra haven't updated their guide yet and therefore I am having to work through page by page. I must say that it isn't written as if they want to trip you up.

Can you confirm that I need to say for each question that it the particular care or mobility need is not what you would expect from an NT 5.9 year old.

ie I have written

Jacob doesn't seem to sense when he needs to go to the toilet until he is absolutely desparate for the toilet. This means that he has to be encouraged, particularly when he is busy, to go to the toilet. If he senses that he needs to go to the toilet, he needs to get to a toilet very quickly as he has sensed it so late. This can be a huge problem when out shopping in town as there are not many toilets around and he can get very upset if he has to wait. We will then have to run to get to the public toilets. He often forgets to flush the toilet and has to be reminded to do this every day.

We have a downstairs bathroom and due to Jacob's late sensation of needing to go to the toilet, he is often unable to get there in time from his bedroom. This has led to repeated wet beds and carpets. We have had to purchase a potty chair for £243 which is big enough for him as infant potties are too small. This then needs emptying and cleaning each day.

Do I need to put a sentence such as " This is not what you would expect from an NT 5.9 year old." at the end for each point?

I'm typing it onto Word and writing in the box "see supplementary pages" which from previous threads, I assume is correct!

OP posts:
rebl · 05/04/2011 10:57

I wrote "This is not normal for a 5.9year old." at the end of every point I made.

rebl · 05/04/2011 10:58

I think if you don't they just say it is or assume it is. Not everyone reading these forms even has a child let a lone a SN child.

Original poster
Ben10isthespawnofthedevil · 05/04/2011 11:00

Thank you Rebl. I thought that I should but then thought that maybe it was overkill! I am only managing 2 questions at a time as it is so difficult to do. I think it is because his disability is invisible being dyspraxia / sensory processing, it reminds me quite how much he is different :(

OP posts:
Triggles · 05/04/2011 11:13

Yes, you have to make it incredibly clear that it is not the same as for an average NT child. Even with DS2, given that he's up frequently in the night, sometimes for hours, I was told by 2 different people from DLA that it's normal at age 4 for a child to be up repeatedly during the night and require continual monitoring for their own safety sometimes for hours before they finally go back to sleep (if they even do go back to sleep). I reached a point where it was "how do you argue with such utter nonsense when they think that? of COURSE it's not normal for a 4yo to be up that many times at night for that long...." sigh... (wandering off to find a "banging head against wall" smiley)

NorthernSky · 05/04/2011 12:12

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Original poster
Ben10isthespawnofthedevil · 05/04/2011 12:19

Thank you Triggles and Northern Sky. At least filling it out on Word means that I can amend all of my answers to be more specific as you have recommended. I only have one child so for me everything is "normal". Very hard to think so hard about what is not "normal".

All really helpful advice. Thanks

OP posts:
Al1son · 05/04/2011 12:33

Filling in a DLA form can be a big reality check. I didn't realise how 'abnormal' our life was before a sat down and thought about it in detail for the form.

It can be quite depressing but try not to let it get to you. we spend so much time focussing on our children's achievements that focussing on their deficits can hit quite hard.

I hope you have wine and chocolate to hand Smile

Original poster
Ben10isthespawnofthedevil · 05/04/2011 12:35

I have Brew and Biscuit Alison. My meds mean that I can't do Wine. Had Baileys yesterday and I am still suffering Grin.

That cheered me up! 4 emoticons in one paragraph Grin

OP posts:
CinnamonPretzel · 05/04/2011 21:33

I've been filling mine out for the last week. There is so much to think about and put into it Shock I have to do little bits at a time or my brain hurts.

Original poster
Ben10isthespawnofthedevil · 06/04/2011 07:12

I thought sod the meds last night and took Magners as a remedy instead. Slept much better!

OP posts:
Al1son · 06/04/2011 08:45

DLA forms do tend to have that effect don't they?

I have stopped DD2's halfway through because I have the excuse of waiting for an additional dx of juvenile arthritis. I doesn't stop me completing the form but I wouldn't send it without written confirmation so what's the hurry til that arrives? Not sure if that's a good thing though. I'm sure it would be better to get it all out of the way.

Original poster
Ben10isthespawnofthedevil · 06/04/2011 16:10

I know I have until 9 th may to do mine and I can't send mine until I have the two reports from last weeks assessments. However I an likely to leave it till the last minute if I think like that!

OP posts:
maammyy · 29/05/2011 20:37

Hi Guys
I'm in NI, and I've been working my way through the new Childs DLA forms since March, its due at the end of June. I find it a horrendous process. Like some of you my son has Aspergers and High functioning Autism, and is in mainstream school. When I first applied 2 years ago we were declined and only received it on appeal. I don't actually think it was the information on the form which was the reason for the decline. At that time the old form asked for someone who saw him on a daily basis to complete that section, I asked his teacher, she didn't decline, but the Head did on her behalf and said that this was a medical form and get his GP to fill it in, I explained he isn't on meds and never saw the GP, so how could she. I also advised him that there was a high possibility that the DLA would write to school, he said if that happened, they would reply. Needless to say the reason it was declined was the DLA wrote to the school on 3 occasions and they didn't reply, with the head telling me he wasn't aware of receiving the requests. Sadly it took me another 4 months of appeal but we got there, no thanks to the school. SInce then my son has received his Statement of Special Education Needs, which I need to send with the new form and an IEP. However, school didn't and wouldn't give me a copy of the IEP, I asked his teacher for it and had the Head call me in again and demand to know why I wanted it, who I was going to show it to and that I hadn't followed protocol by asking him for it directly. Well, what can you say to that, I made the request formally in writing, and sent a copy to the Special Education section at our local education authority. He sent the IEP home with my child 2 days later, turns out by law I should have been given it when it was drafted, I think he got a severe ticking off, but I don't care about him, he's taken a dislike to my son from he entered the school, and its not that my child is agressive, however his condition means he can be disruptive if he becomes distressed. I think the problem lies with the fact he didn't want the bother of all the assessments that had to be carried out in school, as there would be too many "officials" there to see what was happening. Anyway I'm going to see a lady tomorrow night to give me guidance on how best to word the form. I have been putting my info on word so I'm glad to hear that you can actually add this information because there is absolutely no way I could write everything I need to say in those few lines they allow you. Sorry for going on, but its good to be able to talk to people who actually understand what I'm going through.:-)

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